by Andrea Runyan
There are letters about what family and friends of chronic fatigue sufferers should know.
What about letters for what the patients themselves should know about what their friends and family need?
Being a member of the former group myself, I have a sense of what I'm capable of and also what I think the people in my life would like:
My imaginary letter to a Lyme or chronic fatigue sufferer, from an imaginary boyfriend thereof:
1) This is hard on all of us. Imagine times when I'm crabby or can't do things, and think about how hard it is on you when I'm not doing well. Now imagine this happening off and on for months or years. It's draining on me, too. In fact, if you totally let loose and let everything out on me, I might develop some sort of physical fatigue from this myself. So let's try to keep the casualties minimized.
2) Please be as kind to me as you are able. I know there are times when your condition makes it hard for you to control your emotions or not to complain or be irritable. I also understand that the parts of you that make efforts might be low in energy these days. But please understand that your being pleasant to me and not making huge emotional demands on me is very important to me; and I'll trust that you'll do this as well as you can.
3) I know that sometimes your treatments and symptoms are most of what you've done that day and thus most of what you want to talk about. At times when you really want to tell me about these, please go ahead, and I'll listen. I like to know about how you're doing and what treatments you're using. However, just as you might get bored by hearing about the same topic from me for months on end, I do have some upper bound on how much I can hear about your symptoms and treatments, especially because talking about illness has some negative connotations that I still can't get my mind around completely.
What I mean to say is - tell me about how things are going with your condition when you really want to tell me, but if you could go either way, can you lean towards not telling me? Also, if you have interesting things happen in your life that aren't illness related, feel free to tell me about those, because it can help to balance out our interactions and to give me a break from the long-term illness topic.
What about letters for what the patients themselves should know about what their friends and family need?
Being a member of the former group myself, I have a sense of what I'm capable of and also what I think the people in my life would like:
My imaginary letter to a Lyme or chronic fatigue sufferer, from an imaginary boyfriend thereof:
1) This is hard on all of us. Imagine times when I'm crabby or can't do things, and think about how hard it is on you when I'm not doing well. Now imagine this happening off and on for months or years. It's draining on me, too. In fact, if you totally let loose and let everything out on me, I might develop some sort of physical fatigue from this myself. So let's try to keep the casualties minimized.
2) Please be as kind to me as you are able. I know there are times when your condition makes it hard for you to control your emotions or not to complain or be irritable. I also understand that the parts of you that make efforts might be low in energy these days. But please understand that your being pleasant to me and not making huge emotional demands on me is very important to me; and I'll trust that you'll do this as well as you can.
3) I know that sometimes your treatments and symptoms are most of what you've done that day and thus most of what you want to talk about. At times when you really want to tell me about these, please go ahead, and I'll listen. I like to know about how you're doing and what treatments you're using. However, just as you might get bored by hearing about the same topic from me for months on end, I do have some upper bound on how much I can hear about your symptoms and treatments, especially because talking about illness has some negative connotations that I still can't get my mind around completely.
What I mean to say is - tell me about how things are going with your condition when you really want to tell me, but if you could go either way, can you lean towards not telling me? Also, if you have interesting things happen in your life that aren't illness related, feel free to tell me about those, because it can help to balance out our interactions and to give me a break from the long-term illness topic.
4) On a related note, when you feel ok, could we just forget about your sickness for a while? I wish every day that you were completely well and we could just enjoy one another. So when we have a chance to experience that, even briefly, can we just experience it without a lot of comparison with how you feel at other times?
5) I wish there were some way I could make everything better. Feel free tell me things I can do to help that you know I'll be able to do to your satisfaction. Don't ask me to do something if you won't be satisfied with how I do it. I especially like doing things that can alleviate your symptoms (e.g. back rubs) or help you to get better overall (e.g. going with you to doctor's appointments, picking up treatment ingredients).
6) I know there are times when you really don't have the energy to do much for me or to give much in the relationship. That's fine, and I can understand that. But to balance things out, could you make it a point to do nice things for me during those times when you feel well enough? Like, give me extra affection or write a nice note or something (only things that won't tire you, of course). I just want to feel like you still care about me. Maybe do some extra caring when you're up to it so that on average your level of caring will be about the same. And I can understand if you can't do certain types of caring (especially those involving exertion or patience) - I can be happy with whatever types of caring you feel capable of.
5) I wish there were some way I could make everything better. Feel free tell me things I can do to help that you know I'll be able to do to your satisfaction. Don't ask me to do something if you won't be satisfied with how I do it. I especially like doing things that can alleviate your symptoms (e.g. back rubs) or help you to get better overall (e.g. going with you to doctor's appointments, picking up treatment ingredients).
6) I know there are times when you really don't have the energy to do much for me or to give much in the relationship. That's fine, and I can understand that. But to balance things out, could you make it a point to do nice things for me during those times when you feel well enough? Like, give me extra affection or write a nice note or something (only things that won't tire you, of course). I just want to feel like you still care about me. Maybe do some extra caring when you're up to it so that on average your level of caring will be about the same. And I can understand if you can't do certain types of caring (especially those involving exertion or patience) - I can be happy with whatever types of caring you feel capable of.
7) I really want to be here for you, and I'll do whatever I can, but as I'm sure you understand these days, there are limits to how much one can do. Can you try to branch out and have help from other people so that I don't have to be stressed that you don't have anywhere else to turn if I'm not there when you need me.
1 comment:
I can totally see this coming from my husband :)
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